A Monster Called Allopurinol

This year has been positively crazy. I’ve seen the insides of the hospital far too many times and I am sick of it.

I just got home to Penang last Friday after some 12 days in Banting. I had gone home to take care of my 74 year old dad who had been hospitalised.

He had developed pustules on his face and rashes all over his torso and limbs suddenly. His eyes were red as if he was suffering from conjunctivitis. His lips bled. He was fatigued.

Initially, my sis thought he had one prawn too many at a friend’s son’s wedding banquet dinner. I thought the same too.

But seafood allergies do subside within 1-2 days (I should know, Nic has seafood allergies that make him itchy all over so he stays away from prawns and crabs, especially softshell crabs).

Finally my sis took my dad to the private clinic and they quickly referred him to the general hospital in Banting. From there, they quickly transferred him to the hospital in Klang (HTAR) where he was promptly put into the isolation room of the ICU ward.

In the end, it wasn’t the seafood. It wasn’t an infection. It was a drug allergy. My dad was seriously allergic to allupurinol, a type of gout medication. He was given this medication because the doc said he had gout.

If you google allopurinol, here’s what you’d find on Wikipedia:

Allopurinol, sold under the brand name Zyloprim and generics, is a medication used primarily to treat excess uric acid in the blood and its complications, including chronic gout. Allopurinol has rare but potentially fatal adverse effects involving the skin. The most serious adverse effect is a hypersensitivity syndrome consisting of fever, skin rash, eosinophilia, hepatitis, and worsened renal function. Allopurinol is one of the drugs commonly known to cause Stevens–Johnson syndrome and toxic epidermal necrolysis, two life-threatening dermatological conditions.

Note the words I’ve made in bold.

My dad was diagnosed as suffering from Stevens-Johnson syndrome or SJS for short. SJS was caused by the medication given to him by his doctor. I am not going to scare you by putting up images of patients with SJS. Please google these images on your own.

My dad had hallucinations during his stay in the ICU ward. He felt terrible all over. He couldn’t eat properly as his lips were bleeding.

Now here’s the best part: did my dad actually have high levels of uric acid in his blood?

From what I gathered from my conversations with him, he just told his doctor he was experiencing some pain in his leg. And the doctor gave him allopurinol which gave him SJS which made him suffer 16 days in the hospital (10 days in the ICU staring at four walls and a stupid clock and 6 days in the general ward, surrounded by dengue patients).

My problem is this: why did the doctor prescribe him allopurinol just because he said he had some pain in his leg? I find that a lack of wisdom in doctors a frightening thought. My dad was one of the few who’d been rushed to the hospital quick enough to get help. What about others? What about others who aren’t so lucky to live near a town with hospital facilities that could help? What about those who shrugged off the rashes and fever and didn’t seek help?

This isn’t the first time I am angry at public healthcare. Granted, my dad was treated well in the ICU ward. He had a nurse stationed near him all the time. He was closely monitored and given the attention he needed. I wish I could say the same of the nurses when he was transferred to the general ward (when his condition stabilized and his ICU bed was urgently needed by some other patient). In the general ward, you’re a blip on the radar. An unimportant blip by the way.

My dad in the general ward. His friends came to visit and cheer him up.

Things got so bad at one point that my sis and I went to the First Class ward to find out if there were any available beds! You see, my dad was supposed to be transferred from ICU to First Class. Yet they didn’t have beds in the First Class ward so he was temporarily brought down to the general ward.

The general ward was, as I later found out, a dengue ward. Patients with dengue are given beds in this ward. The nurses rush about but nothing ever happens. The doctors (young ones, perhaps on housemanship duties) walk about checking patients’ files and scribbling furiously in each one but they never came around to update me about my dad’s health status.

My dad was wearing diapers and each time he soiled them, he felt so bad about calling the nurses to help him change. At one point, I almost lost my temper as he had been in his soiled diapers for 45 minutes and no nurse came around although they were all at the nurses’ station some 10 feet away! I kept pressing the button over and over, showing my displeasure.

What kept me sane was that I knew my dad was going to be discharged and this would soon be over. These encounters with public healthcare will be over soon, I kept reminding myself. I don’t need to see any of these doctors (not that they were seeing or talking to me).

The day my dad was discharged, I was relieved. He was pleased to be going home. I was happy he was going home. I had spent the last 12 days being a care-giver, cook and driver which isn’t the easiest job in the world. When my sis went off to teach, I’d wake up and cook porridge, mostly vegan, for my dad. I’ll then pack them into two portions, one for lunch and one for dinner. I’d use thermos containers as I needed the porridge for his evening meal to be warm, even at 6pm.

I’ll then drive 40 minutes from Banting (where we live) to the Klang hospital and feed him his lunch around 1pm. When visiting hours ended at 2pm, I’ll grab lunch at the AEON Bukit Tinggi mall which was 10 minutes away. It came to a point that I was so freaking bored of the cafes at AEON that I didn’t know what to eat! Even now I can close my eyes and see in my mind’s eye the cafes and fast food chains in the mall and nothing would interest me. Around 4.30pm, I’ll drive my way back to the hospital and pray I’ll find a parking spot. The Klang hospital is always abuzz with visitors so their car park is always full and I’ll have to encircle the area a few times before I’ll find a spot.

I’ll then spend the next few hours talking to my dad or feeding him his dinner. And at 7.30pm, I’ll drive my way back to Banting, braving the after office hours traffic as well as all the lorries and trucks that are going down to the Teluk Panglima Garang FTZ area. I’d reach home about 8.20pm and I couldn’t even think of dinner. I was dead tired and I knew I had to go through the same thing again the next day.

When he was in the ICU ward, it was a climb of 10 flights of stairs! The ICU ward was on the 5th floor but the hospital elevators were so old and slow that it was always faster climbing the stairs! When my dad was in the ICU, all of us including my 13 year old nephew huffed and puffed ourselves up the stairs twice a day. It was a great cardio workout though. My calves and thighs got firmer so at least there’s some silver lining there.

The good thing was, I started becoming more creative with my vegan porridge. I tried to incorporate as many healthy ingredients as I could. This was where my SoupQueen experience paid off. I cooked with fresh wai san whenever I could. I put a medley of vegetables into my porridge – all nutritious stuff to help his skin heal from within. Carrots, pumpkin, corn, mushroom, goji – they all went into the porridge. I became quite a pro at making my porridge too.

I also discovered that mung beans were excellent for clearing toxins in the blood and so I made mung bean dessert. (The doctor was telling me my dad had sepsis – toxins in the blood – and I knew that TCM or Traditional Chinese Medicine would have a solution in the form of food. Yes, my mantra is – let food be your medicine.)

When he was in the hospital, I made him a plethora of fresh fruit juices. I also gave him plenty of Yakult to replenish his good bacteria – all those antibiotics he took probably zapped the good ones dead.

When he was discharged from the hospital, I made him lots of watercress soup with lean pork and carrot. I made sure he ate lots of fruit too.

The weirdest thing was, I was quite all right when I was attending to my dad for the 12 days I was in Selangor. The moment I flew back to Penang, I developed a fever!

But I am thankful that episode is over and done with. I wanted to write this blog post because I want you to know that doctors do make mistakes. Their mistakes create plenty of suffering and pain for their patients. It shouldn’t have happened. It could’ve been fatal for my dad. He came this close to death just because some stupid doctor played God with medication.

I’ve been fortunate that among all my sisters, I am the only one with enough time flexibility to go home and care for my dad. My youngest sis had to work (she’s a teacher in a Chinese school and that says a lot as Chinese schools are slave-drivers) and my second sis who works in Singapore couldn’t take leave. So it was up to me – the one without a boss – to figure things out and help my dad the best I could. That is perhaps the best reason for entrepreneurship. Freedom of time.